Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How to cope?

I feel like I am at my wits end. I went to see the gastroenterologist today. My stomach and gut are going like crazy. I am uncomfortable, hurting, nauseous and have no energy. Shortness of breath started last week and so did my pollen allergies. I don't know how to get through this week of work. I am on vacation next week so that won't be so bad. The gastro doc has me scheduled for an ultrasound tues next week to make sure I don't have gallstones or anything like that. Then he wants me in for an endoscopy and colonoscopy if the ultrasound doesn't show anything. I can't stand the nausea and pain anymore. It's been going on for months and I am so run down I don't know how to keep going. I am eating next to nothing. A banana and protein shake for breakfast. If I am lucky another protein shake for lunch and another banana. Both of those make my stomach hurt and very nauseous. I can't stand putting anything else in my stomach. Nothing else sounds good.

The gastro doc gave me some samples of Prilosec to try in case excess stomach acid is the problem. He seems to be familiar with AS and how that can affect the gut. When I said I had spondylitis he asked if it was AS. Surprise! Surprise! Most of the time when I mention that disease the docs ask me to spell it because they have never heard of it. I am hopeful that his knowing about it will help in a diagnosis. The prep for the endoscopy and colonoscopy sounds horrific. I am not looking forward to more nausea and diarrhea while my system is being cleaned out.

I am having difficulty coping right now. Fortunately my aches and pains in my joints are minor right now because I haven't taken my pain meds in a couple of days. They seems to slow things down and make my stomach worse.

My husband has been giving me lots of hugs since this all started and helping me as much as he can. He has confessed on more than one occasion that he feels helpless. He wishes he could take it all away for me. He is struggling a bit in trying to figure out ways to help. I am no help in that area because I don't even know how to help myself. I can't take this anymore. I feel like I am almost done. It seemed like there was some hope seeing this new doc but I have to wait yet another week to find anything out. What next?

Christina

My heart goes out to you! I don't have much to offer except my support and to let you know that you and your husband are in my thoughts and prayers. I am the wife of an AS sufferer and I know how helpless the situation can feel to watch your loved one hurt so much! I sure hope you can get your answers soon and start to feel better! Best wishes for you and your husband.

Karen

Christina,
Just to let you know that I have you in my thoughts. Please hang in there! You sound as if you are feeling very unwell - I am glad you have such a lovely partner to help you. I cant suggest much but just know that we are all here for you and wishing you over this hurdle. Hope next week sees a breakthrough in your teatment and a better year ahead.
Debra.

Thank you Karen. I got my husband over here to read your post and he thought it was wonderful. We both appreciate your support very much.

Christina & Glenn

Thanks Debra. I am not expecting any miracle cures although one of those would be nice about now. Your kind words are most appreciated by both of us.

Christina & Glenn

Christina,

Both I and my best friend have AS...however, her family has a history of Crohn's and IBD. She went through a battery of test and fortunately, did not have Crohn's or IBS but an anxiety problem that presented itself with Crohn's and IDB symptoms. She has been working out and has reduced her workload and her symptoms have subsided. She also suffered from extreme fatigue and migraines.

I hope this helps!!

Holly

Hi,

IBD and AS/SpA go together, in fact some classify IBD as another member of the SpA family...Merck manual, Section 51, Chapter 5 I think! Go check out alot of the older patients in the recovery areas, a lot have noticeable posture changes we are all familar with.

A lot of GI Dr.s know the condition very well, mine urged my to seek a rhemmie when I explained all the othe rphantom pains I had, they were fantastic. GI is one of the higher forms of medicine as well, so alot of the guys are well informed.

Are you sure the bannana's are n't making things worse, have you tried any of the protein type foods you can get from the chemist? They are easily absorbed. Might help you feel better.

Take it easy, hope the tests go well christina, just got to hang in there.....


David

Just before I tried the 3-day apple diet my stomach was not in good shape. I found the 3da diet made a huge difference and quickly. The balloon I had in my gut was gone in 4 days. I only ate three apples each day, which might be good for you since you can't eat too much. If you haven't tried it, you really should. I believe it will work, but unless you follow it up with the NSD the pain will come back. I have had a few stomach problems the last few days, but nothing compared to before the 3da diet, and they were caused (I believe) by suspect food. Other than the flavour of some food, what have you got to lose? Good luck if you try it and if you don't good luck at the doc's too.
Eric

Hi, Christina:

Protein shakes actually caused me to flare. The powder was a soya isolate formulation for body builders. I've never had problems with bananas which I could recognize as such, but avoid them now that I'm on the NSD.

You need to eat, but I hope that you consider the NSD choices; I am certain that they would help. I doubt that the ultrasound will show inflammation and even the friendly scopes have problems contrasting active regions. The best thing about the procedure might be the cleansing!

Good luck to You,
John

"You can know the name of a bird in all the languages of the world, but when you're finished, you'll know absolutely nothing whatever about the bird... I learned very early the difference between knowing the name of something and knowing something."
R.P. Feynman,

hi there, i feel for you i do....i have been there myself a few years back now. I ended up having 5 endescopes and after a while they didnt bother me too much ...You will get throught it i did...I ended up having surgry and having half my stomach taken away....not nice ..I went down to 130 pounds and for me thats bad ....But now i can east and drink and I servived
and so will you keep your chin up it will end newfieboy xx